Scan today.

foxhd
foxhd Member Posts: 3,181 Member

Today was my 3 1/2 year post nephrectomy scan. Good news. A couple little things remain stable. Who could've imagined this 3 years ago? So, ALWAYS GET ANOTHER OPINION!!

Amazing since I've had no drug or surgical therapy since Il-2 a year ago. I do get monthly zometa to keep my bones strong.

However, this isn't the end of the story....This spring I developed neck pain. Then arm weakness. I have seen a neurologist and a neurosurgeon. I have what appears to be a severe case of "Brachial neuritis." Very rare and of unknown etiology. It is supposed to last only a few weeks but this has been going on a for months. I need meds every 4 hours as the pain is excruciting in my right neck to shoulder. My hand is good but the rest of my arm has lost 75% of it's strength. I'm pretty good at being a lefty but it gets frustrating trying to do many things. Like hanging storm doors. The pain should eventually go away but I'll never regain all my strength.

So I just get home from my scan this morning and I get a call from my aprn. "Come on back down. In your other arm you have a brachial vein thrombosis." I have had no issues in my left arm what so ever. Hell I use it for everything. No pain. No weakness. No motor or sensory changes at all. Go figure. But now it is Lovenox and coumadin for anticoagulation therapy. What the heck is going on? Weird stuff. 

I know, "B!tch and moan, b!tch and moan. But the entertainment never ends.

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Comments

  • Srashedb
    Srashedb Member Posts: 482 Member
    Excellent news

    Fox:

    your scans were good, no cancer; the other stuff is just stuff. So glad to read this and as a Californian, we have no storm windows unless we lived in the mountains.

    But, after what you endured with those awful treatment, today's results are absolutely awesom!

    Sarah

     

  • Djinnie
    Djinnie Member Posts: 945
    That's what we call Right Chuffing Good News!!

    Fox wonderful news about your scan, Yeah!! A year ago that sort of result must have seemed a bit like pie in the sky! I am absolutely thrilled:) It has been like forging open an iron door, but it didn't stand a chance against the Fox Force. I intend to meet you on the other side of that door one day, it may take me a little while though, I'm having to use a tooth pick on the lock, lol!

    I am sorry to hear about the Brachial Neuritis and the thrombosis, is the Neuritis a form of peripheral neuropathy, and do they treat that with regular physio as well as the meds? I hope you regain a level of comfort soon though Fox, thinking of you:)

     

    Djinnie xx

  • aamdsi
    aamdsi Member Posts: 284
    So so glad thee scan were great!

    But sorry the celebration was marred by the other things. 8-(. Sounds like time for a bike ride!

     

    laurie

  • APny
    APny Member Posts: 1,995 Member
    aamdsi said:

    So so glad thee scan were great!

    But sorry the celebration was marred by the other things. 8-(. Sounds like time for a bike ride!

     

    laurie

    Wonderful news about your

    Wonderful news about your scans! Hoping the other issue is resolved quickly. But I think it's time for some pizza and beer Smile

  • BDS
    BDS Member Posts: 172
    B!tch and moan, b!tch and moan

    Fox, congraduations on hitting the 3 ½ year mark I am now at 2 ½ years now and my surgeon gave me a year and my oncologist gave me 3 ½ years to live. So you have to realize that 3 ½ years is a really important milestone. The fact that you are not on any RCC medications is truly a blessing.  

    Now, it’s my turn to b!tch and moan. I was about to enter a PD-1 clinical trial and had the date of my first infusion scheduled. They did a CT scan and found that I most likely have pneumonia but the doctors are concerned that it might be something else. They found it hard to believe that I have no symptoms. The week before my scan I swam laps on Sunday and did spinning classes at La Fitness on Monday and Wednesday and the only reason I did not go to the gym on Thursday was because I had my appointments on Friday. If I have pneumonia I will be eligible to reapply for the clinical trial in two months. Hopefully, there will still be a spot for me then. If it is something else I am ineligible for the trial. In the mean time I feel fine and I am taking antibiotics. However, one of the conditions of taking these antibiotics is you cannot exercise because the antibiotics could damage your tendons. So right now I am being a couch potato - B!tch and moan, b!tch and moan. - Smile - BDS

     

  • Djinnie
    Djinnie Member Posts: 945
    BDS said:

    B!tch and moan, b!tch and moan

    Fox, congraduations on hitting the 3 ½ year mark I am now at 2 ½ years now and my surgeon gave me a year and my oncologist gave me 3 ½ years to live. So you have to realize that 3 ½ years is a really important milestone. The fact that you are not on any RCC medications is truly a blessing.  

    Now, it’s my turn to b!tch and moan. I was about to enter a PD-1 clinical trial and had the date of my first infusion scheduled. They did a CT scan and found that I most likely have pneumonia but the doctors are concerned that it might be something else. They found it hard to believe that I have no symptoms. The week before my scan I swam laps on Sunday and did spinning classes at La Fitness on Monday and Wednesday and the only reason I did not go to the gym on Thursday was because I had my appointments on Friday. If I have pneumonia I will be eligible to reapply for the clinical trial in two months. Hopefully, there will still be a spot for me then. If it is something else I am ineligible for the trial. In the mean time I feel fine and I am taking antibiotics. However, one of the conditions of taking these antibiotics is you cannot exercise because the antibiotics could damage your tendons. So right now I am being a couch potato - B!tch and moan, b!tch and moan. - Smile - BDS

     

    Wish you well!

    I hope the lung issues clear up quickly BDS and you are able to join the trial later. Somehow I can't picture you as a couch potato!

     

    Djinnie x

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Djinnie said:

    Wish you well!

    I hope the lung issues clear up quickly BDS and you are able to join the trial later. Somehow I can't picture you as a couch potato!

     

    Djinnie x

    Congratulations Foxy!

    Glad to hear that your scan results were great! We thrive on that, don't we?

    Sorry to hear about your other troubles, though. Hope the pain goes away though. It must make it tough to ride the bike. Be careful and be safe!!

    And good luck to you, BDS! Hoping you are able to do the trial soon!

    Hugs

    Jojo

  • angec
    angec Member Posts: 924 Member
    Hey FOXY!  Always something!

    Hey FOXY!  Always something! Sorry to hear about the new pains and issues. Why are they giving you both Coumadin and the Leveonx? Isn't that overkill?  I hope you feel better soon. Keep those strummin hands moving!  Hugs!

  • adman
    adman Member Posts: 336
    Wishing you the very best....

     

    Good news on the scans, glad all is well w that.

    May God comfort and protect you with this additional ailment.

     

     

     

  • tyjsbtn
    tyjsbtn Member Posts: 50
    Glad to hear that your scans

    Glad to hear that your scans are clear.  Gives me hope that I can reach the 3 1/2 year mark.  Sending positive thoughts your way and wish you a speedy recovery on your other issues.

  • dancnbear1
    dancnbear1 Member Posts: 86
    Congrats on the scan and my

    Congrats on the scan and my prayers and thoughts for the other "stuff" to go away quickly. Enjoy the bitchn cause shortly all will be gone and you wont have nothin to **** about.

     

    DB

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    angec said:

    Hey FOXY!  Always something!

    Hey FOXY!  Always something! Sorry to hear about the new pains and issues. Why are they giving you both Coumadin and the Leveonx? Isn't that overkill?  I hope you feel better soon. Keep those strummin hands moving!  Hugs!

    pretty common

    lovenox is used pretty regularly to reduce risk of clotting. The coumadin is to maintain a level of anticoagulation. I've just had blood work today to determinr my PT/INR levels. Once within the target range, the lovenox will be stopped and just coumadin will be given. I may need to stay on the coumadin for life.

  • myoung790
    myoung790 Member Posts: 75
    Glad to hear.

    Glad to hear.

  • NewDay
    NewDay Member Posts: 272
    myoung790 said:

    Glad to hear.

    Glad to hear.

    Darn arms

    Hi Fox,

    I'm so glad your scans look so good.  I am sorry to hear of all of the arm trouble though.  You strike me as someone who is used to being active and busy and I imagine you get very frustrated with anything that gets in the way of that.  I'm hoping it's only temporary.

    Take care,

    Kathy

  • danbren2
    danbren2 Member Posts: 311
    Great News!

    Fox,

         So happy about the scan news! The arm things are a breeze compared to what you have had to go through!

                                               Always, prayers for good health!

                                                Brenda

  • foxhd
    foxhd Member Posts: 3,181 Member
    danbren2 said:

    Great News!

    Fox,

         So happy about the scan news! The arm things are a breeze compared to what you have had to go through!

                                               Always, prayers for good health!

                                                Brenda

    neck pain

    The drugs take care of most of my pain during the day. The first thing in the morning and later in the afternoon it is over the top. Right up there with the worst pain I have ever had. It lasts about an hour before settling down. I've been waiting 2-3 months for it to go away. But it hasn't. Not yet. The weakness is very frustrating. I am unable to do very much right handed. Can't even brush my teeth. I have to do almost everything left handed. I went out to some car races a couple weeks ago. The temp dropped to near 40 degrees. I had to leave because I couldn't tolerate the pain from the cold temp. It may be a long winter! Patience grasshopper. It will come.

    For Ange, I can't play for more than a few minutes. I can't wrap my arm over the top. So I'm trying a litte electric. For comfort.

  • I am alive
    I am alive Member Posts: 315
    Hugs and high-fives

    First off,congrats on the scan news!! You haven't been on drugs for about a year now and you're STILL enjoying stability? That is FANTASTIC!! That AND you get to eat pizza and beer! You ARE a rock star, Fox.

    Big bummer, though, about the excruciating neck pain and arm weakness. And you kept  the lid on that for months, without a peep about it here on the boards. :(

    The body is a mysterious machine so keep expecting the pain to lessen and disappear. Why not? Mind over matter is huge, as you are well aware. I've experienced enough comings and goings of mystery pains to keep the faith alive on that one. And I continue to be amazed at what we can acclimate ourselves to. Still, the thought of you wincing in agony is upsetting. And I feel for your lonely motorcycle- unless you've found a way to ride it?

    Sending you light, Fox, in deep gratitude for all the light and love and ferocity you share with us.

  • foxhd
    foxhd Member Posts: 3,181 Member

    Hugs and high-fives

    First off,congrats on the scan news!! You haven't been on drugs for about a year now and you're STILL enjoying stability? That is FANTASTIC!! That AND you get to eat pizza and beer! You ARE a rock star, Fox.

    Big bummer, though, about the excruciating neck pain and arm weakness. And you kept  the lid on that for months, without a peep about it here on the boards. :(

    The body is a mysterious machine so keep expecting the pain to lessen and disappear. Why not? Mind over matter is huge, as you are well aware. I've experienced enough comings and goings of mystery pains to keep the faith alive on that one. And I continue to be amazed at what we can acclimate ourselves to. Still, the thought of you wincing in agony is upsetting. And I feel for your lonely motorcycle- unless you've found a way to ride it?

    Sending you light, Fox, in deep gratitude for all the light and love and ferocity you share with us.

    thanks.

    You're right. I didn't mention anything all summer because I expected to have gotten better by now. Let the bizarre side effects show themselves.

  • APny
    APny Member Posts: 1,995 Member
    foxhd said:

    thanks.

    You're right. I didn't mention anything all summer because I expected to have gotten better by now. Let the bizarre side effects show themselves.

    I’m so sorry you’re having

    I’m so sorry you’re having such severe pain. Along with that, the frustration of not being able do much with your right hand must be really difficult to cope with. Hoping it goes away soon and you get some relief and will be able to resume all the things you love to do.

  • firedude21
    firedude21 Member Posts: 52
    foxhd said:

    thanks.

    You're right. I didn't mention anything all summer because I expected to have gotten better by now. Let the bizarre side effects show themselves.

    Keep the faith

    fox-

    Sorry to hear about your new issues. It seems like if it isn't one thing it's another. Keep the faith brother I'm sure you will whip this problem soon.

     

    firedude21

     

    p.s. - I'm guessing that you are unable to ride while dealing with these issues. If so, I know that is driving you nuts as it is me. I have been unable to ride for two months now and am just hoping that I will be able to ride again sometime in the future.